Mental Health & Chronic Illness – Things People Don’t Understand

Toughen up – that phrase makes my arm hairs stand on end… my family members said it a lot, so did my teachers. Stop calling me weak – on one hand I hate being told that.  Regardless, coming from my mother it did me good and helped me become the person I am today.

The other one that REALLY gets me is “you’re not trying hard enough”. This is the worst thing you could ever say to someone who is doing there honest best. It’s soul crushing. It doesn’t matter your intentions – I hear “your best is not good enough“.

Certain simple things like timing in conversation trip me up. My brain is working overdrive but still I make simple mistakes. Because I can be extremely skilled at complex tasks people say things like – “you are too smart for this” & “you are not trying hard enough”.

On the inside I am dying because my best is perceived as laziness. I’m working so hard –Not trying? They can not comprehend how difficult this is for me.

People assume I am being rude and I rub them the wrong way. I’ve been told I can be perceived as standoffish and distant – not really what I’m going for. It keeps people away.

I am very isolated because of my limited social skills. My awareness of my social impairments has helped me to develope severe Social Anxiety.

I don’t go out, I don’t socialize – I get more than enough human interaction (the wrong, over stimulating, kind) at work. Other than going to the office, I never go anywhere without my husband.  He is my rock and is wonderful to me. He seems to pick up on the things that I miss. We compliment each other nicely.

I don’t bond with many people, but the people who I do bond with have my loyalty till the end. When you can’t read people and tend to be gullible you have to guard your inner circle. I don’t want to let a snake in the hen house.

My co-workers are all wonderful but unfortunately we are never on the same page. They go out, they dance, they drink (a LOT), they get loud and crazy. None of that appeals to me one bit. They care about brands and dinners at expensive restaurants – I feel like these things are a waste of money. I don’t know how to talk to them because we have nothing in common.

My thoughts are on my mortgage, family, my current obsession, and saving for days when I may no longer be able to work. I can’t throw money away like they do – I don’t have money to waste.

The risk of loosing work is high when you have a chronic illness. If you use too many sick days your boss will fire you. I am healthy enough to work right now but I don’t know if this will always be the case.

There was a time years ago when I was sick 3 days a week – the beast. I fear it’s return more than anything.

I am “disabled” but not on any disability. I don’t have supports other than my husband’s care. I’ve been disabled to the point where I really could not live a good life before – it was horrible and I never want to do it again.

If I get sick I will lose my job and my home. More than anything my home is my safe place. Living in apartments was hell with my sensory sensitivities. Maintenance men insisting they have to fix something are not something I can deal with on high sensory days – neither are loud neighbors.

Having my own place is essential to my mental health and having a job is essential to having a home.

I also spend more out of my own pocket for medical expenses than most people. Almost every doctor I need to see is always a specialist who is “out of network”. I don’t get all the recommended medical things done because the costs have gotten ridiculous.

I have to eat organic and gluten free because the chemicals and gluten make my stomach violently ill. I am chemically sensitive – something that is common in people with AS that I speak to.

Money is always tight but we are getting by. I am trying my hardest to keep everything in balance.

All I can do is take care of myself and hope for the best.


38 thoughts on “Mental Health & Chronic Illness – Things People Don’t Understand”

  1. Oh, Honey..I wish there were something I could do to make things easier for you! It’s terrifying to think of losing your home. I know how you feel about apartments. The idea of having to live with strangers just a wall away is incomprehensible to me. I can’t make things right but if you ever need to vent you can always email me. I am a great listener.

    Liked by 2 people

  2. remember that the most absurd/obscene of these cliches are not to be taken literally. when youre trying as hard as you can and a well-intentioned person says “try harder” theyre not being obtuse, theyre just trying to appeal to something in you as a person.

    …but im actually on your side on this. they dont realize theres a point where you can really do no more (and 9 times out of 10, should not even try.) they dont understand your “red”– like this: …but i do. they dont understand why you dash away mid-conversation, clutching the last “spoon” that you need to get home in one piece.

    this lack of awareness is one of the single most damaging things in asd/nt relations, because nts cope with it either by giving up on you, or coddling you in absurd (superficial and useless, almost superstitious) ways later on. like theyve learned how to pack up your most sensitive aspects in foam, but they still dont know anything about you so really what theyve done is missed the entire point– YOU know what you need, but theyre still trying to guess, rather than take your word for it.

    im afraid all that stubborness of theirs is a side-effect of the notion that your situation is pretend in some way. fix that, and the rest may fall into place. (or as q once said: “change the gravitational constant of the universe, thereby altering the mass of the asteroid.” …piece of cake!) as for the things you mention in this post, well– at least theyre not aimed just at you(/us.) they dump that tripe on everybody, its just even worse for us. cheers.


    1. “the notion that your situation is pretend in some way. ” – this is hard to fix. I’ve lost a friend over it recently. I was putting way more effort into the relationship – but she could not see my effort to her I was lazy for not going out more and not trying hard enough. I realized she was causing me more stress than joy as I desperately tried to fill her needs. She flat out told me I did not meet them and she did not consider me a friend any longer – because she doesn’t see me often enough. I thought she was one of my closest friends, but she always pointed out my social shortcomings (helping me to discover my Autism and killing my self worth). I’m done. Why do we do these things? I’m happier at home with my husband anyway.

      Liked by 3 people

      1. i can promise you one thing, anna. everyone has days they cant meet others expectations– everyone has imperfections, and lots of people are afraid to show them or admit them.

        if youre the sort of person who is shall we say– below average in “faking perfection” as a human, and above average in trying anyway– youre going to find some really great friends (rare but precious) and lose a lot of “so-so” friends in your life. your friends are going to be more valuable not only because you appreciate them more– also because theyre really great people. best– happy holidays if we dont talk again in the next couple days.

        Liked by 2 people

      2. I lost my best friend of 45yrs standing recently too; it took that long for the one-sided light to go on and boy was it bright! There was absolutely no understanding of my difficulties from that side. I too was done! It is sad though, very sad, but somehow I feel so much lighter. And so much less alone thanks to your blog ❤️

        Liked by 1 person

      3. My mom used to say when someone acted like that toward me, “They did you a favor”. A favor? She explained that they showed their true selves and I could be free of them. Socialization is painful and exhausting. I’m glad you have your husband. I hope you could find a job where you could work from home. I know there is software testing, if you are good with that. I’ve had it with judges in my life. The Bible says, with what measure you use to judge others, that same measure will be used back. That person will reap what they sow. Please hang in there.

        Liked by 1 person

  3. I quit a job few months ago for various reasons (job nature didn’t match what was advertised, socially demanding, last minute meetings, long commute etc). A comment I got was “that is so typical of your generation.” And it was hurtful, regardless of the intention of the person saying it. I felt like people who made this kind of remarks which suggest that we are not trying hard enough are very irresponsible, especially if they don’t know us well enough. Sometimes I felt they are trying to test my limit and that I have to have a meltdown to prove that I am indeed struggling before they will start to take our invisible problems seriously, akin to saying you aren’t really depressed unless you are suicidal. I find this way of judging people with mental health issues very obnoxious.
    Financial insecurity is of course another big and practical issue that causes tremendous anxiety.
    I feel the pain and wish I can be more encouraging and helpful. Hang in there!!!

    Liked by 2 people

    1. I think I need to rock in the corner with my hands over my ears to get any help…. not that I don’t do that at home alone sometimes. Seriously Seriously my on physician did not believe me when I told her I was diagnosed originally. I handed he the diagnosis and I could tell she was already questioning it’s validity. “I’m surprised she put you on the spectrum.” All I could say was that there is a lot that I keep to myself and growing up feeling different teaches you to hide everything that is different about you. You learn to blend in as a survival tool.
      Yes – nobody is going to keep me down!

      Liked by 3 people

  4. I do want to make a meaningful comment, but I can’t. All I can do is swear violently at the people who do this for no reason. “Work hard,” “You’re better than this, “sigh why don’t you try to actually do it.” Yeah… I’ve been there. I say these things to my daughter when she literally does not do anything and claim to be trying. Accountability. I explain what her task is, and what she is doing, and then ask, “How are you trying?” I usually get back something that has nothing to do with what the task it. I can’t talk about what you wrote on in a blunt way towards you because I just have rage about it. No one needs to go through that when no one is trying to understand the other side. Check out my latest upload please. It falls within what you talked about. Kind of… I think. If you want to reply with what is really in my head, I will. Just let me know. I mayhap can tone back the swear words and use… more… socially accepted… rhetoric.

    Liked by 1 person

      1. Swearing is as common as breathing. I can’t see why it’s still so taboo. HBO, Show Time, Cinemax, Starz, and then YouTube personalities, bars, pubs, concerts…. I just wish people would stop being so prudish about something so hackneyed. Thank you for liking the video. I appreciate it lots. I would cover Autism, but in truth, I don’t know enough about it to say anything worth while. I just can’t do an injustice to something so delicate. I hope you understand.

        Liked by 1 person

        1. I understand completely. It happens to me – whenever I try to speak face to face about my Autism all the knowledge wont come out. I hate when that happens. I don’t think I could ever make videos any time I get nervous I stop being able to speak in a fluid way.

          Liked by 1 person

          1. If you ever one day strive to do it, just sit at your computer, grab the microphone, and talk about something you enjoy. Something random. Keep in mind, you are not posting it. You are merely wanting something to listen to as you do other stuff, and no one will understand you more than you. Do that for a while, and never upload it, or do it for uploading. erase them if you want. My Co-Host, Sidra Owens of The wicked Orchard, she talks on YouTube. Two short stories are up there. Check it out. You never know, something, anything like YouTube, might be a calling for you. We here LOVE what you have typed. Just read what you’ve typed. I WILL listen. Other will, too. looks at room sternly Think about it. Take Care.

            Liked by 1 person

          2. I am glad writing is my skill and that I can use it since spoken words have never been my thing. Now more than ever I am pushing through more when I have trouble with words but its not always pretty. Baby steps getting better now that I can say – yes I have a problem but I am working on it. #AutismThings


  5. As always, there’s so much here I can relate to. I have a virtually non-existent social life because I just can’t face going out, when I do make friends, I’m very loyal to them.
    Thank you for your great posts, which have helped me to understand my condition better, it’s been invaluable given the difficulties I’ve discovered in getting help from mental health services in my local area.
    I hope you have exactly the sort of Christmas and New Year you desire (peaceful and calm I imagine, I know that’s what I want).

    Liked by 1 person

  6. I’m so sorry to hear about your hardships. 😦 I hope things get better for you soon. I know how hard it is when people say “Toughen up”. I’ve had that happen to me before too. People just sometimes don’t understand how hard it is for people with Autism to function in a world that is confusing and stressfull.

    Liked by 1 person

  7. I went to a Buddhism conference where an NT explained how establishing a mindfulness practice with her coworkers helped her deal with angry customers. In describing the first instance in which a customer called up in a panic, she observed how her refusal to respond with anxiety actually calmed the customer down, helping her to see how to go about solving the problem rather than reacting to the fear that came with the way a supervisor shifted responsibility for it.

    I share this because this pathology in the NT community is so profoundly painful to you. I apologize. I do my best to combat it.

    Liked by 1 person

    1. The very working class, almost cliche, phrase “work smart, not hard” has become especially relevant outside physical work. It took a long time, but once I accepted that I think and interact differently than what I’d thought of as normal, it was easy to start looking for behavioral patterns and accepting the ones that made me feel good. The way we are isn’t an “excuse” for our behavior. Sometimes these labels help, if anything to open a plethora of resources to explain why we think the way we do and how to compensate for it in our world. We’re not hiding behind labels. It’s useless to do things their way if they don’t work.

      My good friends and family know I hide. I’m open about my need for solitude with them and have released the desire to be understood by those far enough outside my bubble. It just feels increasingly better to honesty accept who I am and what I need rather than feel the failure of trying to force my way through it, my interpretation of “trying harder.” To do life the smart way, not the hard way.

      I now feel empowered by saying no, rather than guilty. I feel almost righteous in making a decision; I feel in control of my moods and my life, rather than chasing the expectations of others. Sure, I’ve distanced myself from some cool people from this, but overall I feel my life is calmer and happier from just learning to say “I’m staying in” rather than drinking with strangers or even hanging out with a good friend when I need some alone time.

      Also taken some time, but I’ve had to learn not to over do it with solitude, that as much as it may feel good to hide in that moment rather than deal with putting pants on, I know I am human and need an appropriate amount of interaction. So I do make time to say yes to the right people and activities, but more importantly I’ve tried to be the one to suggest interacting in ways that involve common interests. Another empowerment, being in control of how I send my time.

      Ha, it seems this is a place where many of us ^ already go to for a particular type of supportive interaction. I’m sure I’m not the only one here grateful for the strength and words of you strangers here.

      Liked by 1 person

    1. You truly flatter me! I do not know if I am that talented. I am very carefully researching my options for a book. I need to stay anonymous, and there are a few other concerns that I am looking into. I’ve never written a book but plan to approach it in true Aspie style – by gathering ALL of the necessary information first. Now I am studying publishing. lol.

      Liked by 1 person

      1. You have LIFE EXPERIENCE and can give us a glimpse on what it is like to live with autism! I spent years workig as an autism therapist and it would of been so helpful knowing all the information you are providing! Of course stay anonymous! U can still do it. I am rooting for you!!!!

        Liked by 1 person

    1. I don’t know how to accept so many compliments! It’s funny to me that people love my writing so much. All I do is share my thoughts. Growing up I NEVER would have imagined anyone would care about what I was thinking. It doesn’t feel like real life. I feel so ordinary but am very glad to help people. I really have the best readers!

      Liked by 1 person

  8. Dear Anne,

    Keep on keeping on even when you feel misunderstood. Some of the greatest people in history struggled with their issues. However, they turned that “weakness” into their strength. You do that well. That’s how you use your God-given gifts!

    Happy New Year,


    Liked by 1 person

  9. As I read this I am struck by how much it describes me. That wasn’t my intention, but it hit too close to home to ignore. I am so glad to hear you have a supportive spouse; sometimes that’s all we have. I hope things get better – or at least remain manageable. You are not alone.

    Liked by 1 person

  10. I actually take risks in order to become visible; fortune favours the brave, and all that. But I’m not a ‘party all night’ type.

    One of the main problems is that employment opportunities tend to be biased towards extroverts; sales, marketing, etc. There is the facade of ‘The Dream’. A Teacher I had for a Software Testing course eighteen months ago worked for Universal Studios in LA and couldn’t hack the ‘work hard and play hard’ approach. (I have christened them ‘Generation Mr. Brightside’) Actually, I made that up just now. :p

    We don’t seem to have a ‘horses for courses’ approach to employment.

    Liked by 1 person

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